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January 6, 2013

Mental illness: Stigma starts at home

In the
aftermath of the horrifying killing spree at Sandy Hook Elementary, there has
been lots of renewed attention on mental illness: how to keep the few mentally ill people who are violent from getting their hands on high-powered firearms; how our dysfunctional health care system fails to
provide adequate treatment to people with mental illness.

As usual, it takes
a tragedy like this for Americans to summon the political will to consider
budgeting more money for treatment programs. And, maybe a tragedy like this
nudges people to want to better understand conditions like schizophrenia, bipolar
disorder and depression, as well as autism and Asperger’s.

Circling around all these discussions are yet more calls to reduce the stigma around mental illness.

“Stigma is out
there and it makes people feel damaged, lesser.”

So writes Elyn Saks, a
professor at the USC Gould School of Law, who described her life with
schizophrenia in her 2009 memoir The Center Cannot Hold: My Journey Through
Madness. A recipient of a MacArthur Foundation “genius grant,” Saks said in
a 2011 Huffington Post blog that she continues to confront stigma, even though she has found, through a combination medication and
therapy, a way to lead a fairly stable, happy, functional life.

Many people with mental illness aren’t so fortunate. They don’t get the
treatment they need. And it’s not always because of lack of resources. It’s
because it's terrifying to take on the label “mentally ill.” That identity can
have pretty far-reaching consequences in terms of gaining--or not gaining—work
and housing and in moving through society. Many people with
undiagnosed mental illnesses fear being locked up, or are at risk of losing relationships. Stigma, writes Saks, “encourages people to be
in the closet when being able to get help from friends, when one is suffering,
is very important. Stigma's worst effect is that it deters people from
accepting their illness and agreeing to treatment. If mentally ill people
didn't have the added burden of stigma, maybe more of them would seek
treatment.”

My husband has
schizophrenia, which affects about 1 in 100 people around the world, regardless of social, cultural or economic background. More
accurately, he has schizoaffective disorder, which can most easily be described
as a combination of schizophrenia and bipolar disorder.

He was
diagnosed in 2001, and he’s actually a rare case of someone living a stable life -- though his stability is all relative. He still has many bad days when he wonders if he will ever feel any kind of happiness or joy. According to a University of Virginia study,
he is in the small minority of people with schizophrenia who have remained out of the hospital for 10 years or more.

He diligently
takes his medication, even though it sometimes leaves
him feeling sluggish and makes it hard for him to concentrate, causes his hands
to shake, and puts him at high risk for diabetes and liver problems. He takes
his medication because he prefers to be free of voices tormenting him all the time and telling him he's a piece of shit. The medications quiet those voices, and allow him to be a loving husband, father, brother and son-in-law. He balances our
checkbook and looks after things around the house. He has been able to volunteer for his church and other local organizations, perform fairly
well at jobs, though he’s unfortunately found that certain high-stress work environments bring on his most
debilitating symptoms – the hallucinations, delusions and paranoia.

He faces stigma
fairly constantly. Look, we live in a community where college-educated, professional couples like us, at this point in our lives, should be facing such major decisions as what type of counter tops to put into our new $100,000 kitchen remodels. I surely do envy people who have these sorts of choices to make. We might, in the next few months, be able to afford to buy a few new decent kitchen knives.

Anyway, my husband is fairly open about his illness, but being
open has put him at risk of losing job prospects or of people politely avoiding
him in social situations.

But as I write
about how society stigmatizes the mentally ill, it occurs to me that I’m only just hovering around the truth.

That’s because
I think the greatest stigma he faces is at home. For one thing, he says he
stigmatizes himself. As he writes in his blog: “My
near-constant message to myself is that I am incapable of work, friendship,
fatherhood, marriage - the list goes on - because I am mentally ill. I
stigmatize myself, believing that I am too broken, too afraid and too dishonest
to be someone other than a weak, narcissistic, crazy man. I live with fear
surrounding almost every action, thought and encounter. Doing nothing and
believing in only the worst are ways I protect myself. I disconnect because I
am afraid of my feelings and this feeds my lethargy, isolation and depression.”

What
he doesn’t write about on his blog is how I treat him. He's very kind and circumspect in that way. He assures me that I am
always loving and kind but I don’t believe him.
I stigmatize him, too. I go through
periods of being angry and being disappointed that he is sick. I have
been quick to blame him for problems in our marriage or in our family.

I feel shame that he's sick and that we don't have certain things, decent health care coverage among them.

There have been times when it was tough coming home after working, to find him
sitting in a chair in our living room, reading a magazine or a book, usually on
Buddhism. It’s the same place he was sitting when I left the house a few hours
earlier. And it’s the same book. I grumble, I wish I could just sit
around and read a book, and contemplate living in the moment and how the
various things that scare me -- like financial insecurity or the possibility of him having another breakdown -- might just be figments of our imagination.

Not long ago, I
interviewed a law student for a publication I was working on. In our conversation about why he wanted to
become involved in health care law, he revealed that his mother had
schizophrenia. He was responsible for making sure she got in to see psychiatrists and get her medication. He said his father hasn’t
been very helpful. That’s because his father, an immigrant who holds
onto certain traditional ideas, believes that mental illness is a weakness of
character. His father, this student said, doesn’t believe his wife is sick.
According to him, she is just “acting
up” or “being lazy.”

I’ve been in
and out of denial about my husband’s illness since his diagnosis. I sometimes
wonder if my husband is being lazy – after finding him in the chair, reading one
of his books or staring into space. I blame him and I blame myself for the circumstances we find ourselves in. If I had made different choices in life, maybe we could have weathered this crisis better. Maybe if I wasn't such a big, scared child inside, I would grow up, leave denial behind and live with a measure of serenity in accepting our lot in life

But I'm defective and broken, too. I've told him on various occasions that I’m
sad he’s ill. I mourn that he’s not the husband-protector I imagined him to be when we married, and that our life
hasn't turned out the way I'd hoped. He
listens very patiently, kindly. He's always been good at listening to people. He knows I’m angry and says he accepts it.

And then I feel
guilty because I think my anger and disappointment can’t help his already fragile sense
of self-esteem. I know I’m blaming him
for things outside his control, for example, the way it can be a daily struggle for him to get motivated.

There are the
so-called “negative” symptoms of schizophrenia. I had to remind myself of these recently. Such symptoms are what you often see in people with depression, and the symptoms cause a lack of motivation, an
unwillingness to talk much and inability to enjoy life. Most people are familiar with the “positive”
symptoms of schizophrenia: the hallucinations and delusions, the difficulty in
being able to distinguish between what is real and what is imagined. These are the symptoms, we've been led to believe, that prompt violent outbursts and the horrifying killing sprees like those at Virginia Tech or Tuscon, Arizona, and, perhaps in Newtown, Connecticut.

I know I
need to do a better job staying informed about mental illness, including the
latest research on brain science and treatments. I also need to stay in touch
with the folks from the local chapter of the National Alliance on Mental Illness. NAMI is a phenomenal group, and both my husband and I have been
involved with NAMI's Contra Costa chapter on and off over the years. I took its
very enlightening 12-week Family to Family course, where I received a pretty
extensive education about various mental illnesses and up-to-date information
about medications.

One of
the purposes of the course was to help me and other family members gain empathy by understanding the
subjective, lived experience of a person with mental illness.

I'm still working on the empathy part, and I thank my husband for his love and patience with me. Maybe reading all those Buddhist books helps him stay in the moment and show some loving kindness to his often-living-in-denial wife. I appreciate him more than I tell him. He is my best friend and the heart and soul of my life.

Many thanks to Amber Christian Osterhout, a Saratoga Springs, NY-based artist and designer and advocate for the mentally ill, who allowed the use of her image with this post. Osterhout's award-winning Gaining Insight website offers education about mental illness in order to reduce stigma.

4 comments:

Great Post. I guarantee you are not alone. And I would have to add to your condition list. Yes, Mental Illness wrecks lives and some people are able to manage but there are so many other conditions that do the same that get over looked because they are more main stream. Migraines, Fibromyalgia, even heart disease and Diabetes change how people think, look and interact with people. Stigma is a harsh word but it puts on exclamation point on the subject judging starts at home, and the first home is the space between our ears. Thank you for that great blog.

So Martha, you talk yourself in a circle here, a little, from questioning your love for your husband (a little annoyed with his Buddhist place-holding), to expressing that same love, in a genuine way. He is your best friend. You've written this before. Sure, stigma begins at home; but it has a really different flavor than that of people less informed, less educated about mental health, and less close to the person with the condition. I don't think it's unusual for you to stigmatize your husband's situation as someone immediately affected. It would be more unusual if you didn't. I mean, is there really any such thing as true objectivity? Or neutrality? Should there be?

Certainly, the flavor of the way I stigmatize my husband would be different than someone out in society, but I still consider some of my attitudes and behavior stigmatizing. I understand where my attitudes come from, and I can forgive myself to some extent.

I hope I also made the point that family members also face stigma. I think parents especially are judged if they have a child who acts out or struggles at school and doesn't fit in -- because of a mental illness.